ABI

Reluctant Progress. Janet grins and bears it. #TSJ

Tez had Janet in the standing frame again this morning and by all accounts it went well. Mary Lou did her usual Speech session with Janet as well and after some negotiating with Jess, Janet agreed to have a nap. She says she didn’t sleep but Jess checked on her an hour in and she was snoring away. By the time I arrived Janet was watching TV in the living room and seeming quite happy. She had trouble telling me about her day but with some prompting got the major points out. She did know she was watching Dr. Oz and he was talking about Aspirin. High five. I told her some good news from Dr. McCann’s office that I got this morning. I had given a report on the effect of the Botox and also mentioned I had not noticed any negative reaction to Janet being on a lesser dose of Methylphenidate for the last three weeks so he agreed to discontinue it all together. One less pill for Janet to swallow!

I took Janet out in the sun for a walk before our first order of business, the weekly Skype chat with Leslie. We walked around part of the neighborhood we have not explored yet and agreed we don’t want to live there. It would have been nice to stay outside to Skype but the wifi connection was too slow so we had to go to Janet’s room. Before we could get back out Garrett offered to take Janet to the gym to ride the bike. I was disappointed that Janet fought the invitation the way she did. I felt she did really well yesterday and that she seemed very comfortable on the bike. As the argument progressed it became quite apparent that Janet is really lacking confidence in doing the gym activities. She feels she should be better than she is and doesn’t see the progress she’s making. The great thing about the bike is it shows you exactly how you are performing and once Janet reluctantly agreed to go, Garrett and I were able to show her the numbers to watch. She made a steady twelve rpm for twenty two minutes today. We didn’t measure yesterday’s session but today’s seemed better and Janet was reasonably happy afterwards. I don’t want her to focus too much on the numbers as some days will be better than others, today was better but I got a sense she was being obedient rather than fully participatory. We’ll see how it goes tomorrow.

The bike ride definitely gave Janet a boost of energy and appetite. After dinner we went for a walk to Beasley Park and watched the last twenty minutes of a soccer game. It was really nice sitting in the sun doing that but it was hard to see as the grandstand is on the east side of the fields and at that time of day the sun is shining right in your face. Still lots better than watching soccer in the North Vancouver rain like we used to.

Janet wanted to read when we got back to Connect and we got a good chunk of Slow Dance done. Almost finished. My cousin Sharon, shared a video with us that features a really cool bike that I could use with Janet. More importantly the video is a beautiful story of love. Janet and I both teared up watching it. Your turn.

Praying for a solid night’s rest and an energetic tomorrow.

She’s a Real Stand Up Kind of Girl. A day of successes for Janet. #TSJ

Today was one of those days where everything seemed to go right for Janet. It started this morning in the gym with Tez, Joel and Lorne.

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That’s Lorne with Janet as she stands in the standing frame for the first time at Connect. Tez was pleasantly surprised at how well Janet can stand and weight bear through her legs. She is really improving in that area thanks to her hard work in the gym and the Botox. Tez even had Janet standing on her own, balancing herself with her butt up against the edge of the table mat. I’m really impressed by that one and will credit the work in the pool with helping her to figure out how to do that. Lorne took Janet for a walk outside in the standing frame so she wouldn’t get bored as Tez wanted her in there for twenty minutes or so. I remember seeing Fred and Chris use this apparatus and hoping Janet would get a chance one day. I didn’t expect it to be this soon.

I had a good chat with Lorne, Jess, Tez, Brian and Joel when I arrived this afternoon and everyone seemed excited for Janet’s achievements with Tez wanting her to use the bike this evening as he believes she’s ready for that. He recommends keeping the pool sessions going and trying to get Janet into our hot tub as much as possible. They are two different types of therapy and Janet will benefit from both. To simplify our schedule I will see if we can change the Thursdays to Fridays so we can just go home from the pool. Jess said she put Janet to bed amidst much protest over an hour earlier so I quietly entered her room to see how she was and this is how I found her.

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Not exactly Houdieno but if she starts believing she can walk, watch out!

Janet was in a very good mood as she gave me her account of the day. She still downplays her achievements but not to the degree she has in the past. Tez stopped by to show me how well she can stand using a slightly different technique than I was using. It gives more responsiblity to Janet and Tez suggests doing it as an exercise a few times a day.

We made it outside for happy hour and a Skype chat with Mary Gaga. Garrett then suggested Janet go to the gym to try the bike before dinner and Janet accepted with no argument at all. There is a Keek of her first pedals, @larrylatour, and as you can see in this pic she was quite comfortable on the bike and had a really good first go at it.

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Ideally she’d be able to pedal without the arm assist but for this session and probably the next while she will need it. I reminded her it’s not that different from the elliptical machine she used to use but she says she doesn’t remember that. As well as she did on the bike Janet didn’t seem all that impressed with herself but hopefully her attitude will improve with some more successes.

After her bike ride Janet BBQ’d herself a couple pieces of steak for dinner and gobbled them up along with her first corn on the cob in over a year. She loved it of course. We then had a little Skype chat with Andrew before reading some Slow Dance while Janet lounged in her wheelchair. I turned the lights out on a very content Janet tonight and pray she has a good night’s sleep and is ready for an active day tomorrow.

Another hole in the head. Janet goes to the dentist. #TSJ

I let Janet sleep in today knowing she wouldn’t likely have time for a nap this afternoon. She was quite happy to snooze a little longer in the sun from when she woke up just after eight. Breakfast was nice and relaxed but we somehow ended up being a little rushed to get to KGH for swimming. The pool sessions were good today with Janet having more control of her right leg than on Thursday. That allowed her to do some decent “walking”, making it about one and a half lengths of the pool with assistance. Her floating wasn’t quite as good today but she allowed me to get her face underwater briefly a couple times and she didn’t panic at all. The confidence is growing. I noticed a big difference in her flexibility compared to the hot tub even though there’s only two degrees difference in temperature. Janet felt pretty good about her pool sessions today but says she liked the hot tub better because it’s warmer.

Before we left the house this morning we made sandwiches for lunch as we only had a half hour between swimming and the dentist. We sat in the car near the beach and enjoyed those then made our way to Creekside Dental. Janet was a little apprehensive about this appointment and was starting to fade a little but Collette, Tannis and Colin treated her like royalty and she stayed awake and cooperated very well the whole hour she was in the chair. The cavities she had before getting sick are still there unfortunately so she has to go back a couple more times over the next month or so to have those filled in. Colin assured me he didn’t see anything going on in Janet’s mouth that would indicate side effects from Dilantin and I was happy to hear that. With her new toothbrush and floss in hand we drove off to Connect.

By the time we arrived at Connect it was happy hour so we sat out in the sun while Janet ate an apple and drank some water. I think I was pretty good about not nagging her to drink today and pointed out the benefit of having the fluoride treatment at the dentist where you aren’t allowed to drink for half an hour afterwards. She was please I couldn’t nag her then. Janet ate her apple quickly giving us time to walk down the street to a little beach on Wood Lake. That walk and beach are not nearly as nice as around KGH but it’s what we have this summer and I am glad we have something. All those trips to the beach last summer were nice but I was never sure how much Janet was getting out of them. Today her face lit right up when we got to the beach and she constantly was looking around at all there was to see. She even followed and smiled at a couple of noisy Canada geese that flew by maybe twenty meters away from us. We watched a couple of boats that were playing on the lake and she agreed it looked like fun. Time to see if I can get her in and out of one so we can give it a try!

With dinner done the next event was the usual argument about going to the gym. Janet capitulated eventually on the condition that I go too. Bob joined us and worked Janet’s legs while I did her right shoulder and arm. We both noticed nice improvements and Janet didn’t mind the workout at all. She wanted me to read some Slow Dance with her before bed and we had a good discussion about what we’d read afterwards with Janet remembering one of the topics we had read about. Considering the lack of a nap and the busyness of the day Janet did very well to stay up until nine but was happy to say goodnight. Praying for lots of rest and healing and a good day with a more regular routine tomorrow.

Gap Girl. Janet goes shopping. #TSJ

Another gorgeous day got off to a nice relaxing start as everyone pitched in to make a pancake breakfast. It wasn’t difficult to get Janet to eat seconds then thirds even after her fruit and yogurt starter. She seems to be more accepting of the cranberry juice we’ve been trying to give her and as long as she is reasonably awake she is drinking more water. With the nice weather comes the need to drink even more water unfortunately and that is proving to be a challenge so far. I think I just have to learn to stop pressuring her and make sure she always has some available to her and she’ll manage just fine.

With breakfast cleared all the girls gathered around the computer for an online shopping adventure. Not surprisingly Janet tired of it within a half hour and combined with the uncertainty of her size it was decided we’d hit the mall before Heather and Laurel started their journeys home. Turned out to be a pretty good idea as we got some good help at The Gap and Janet got some colorful shorts, pants and shirts, all in about twenty minutes. My kind of shopping. That left us enough time for lunch outside at Red Robin where we enjoyed some last minute visiting with Heather and Laurel who took off for the airport and the highway as soon as we were done. Their visit was way too short but we are thankful they are able to make the trip to visit as regularly as they do. We are blessed.

After trying on a few of the new clothes at home Janet took a nice long nap which seemed like a waste of good weather but she really needed to catch up on some sleep. I think with both girls here and the heightened state of activity she was overwhelmed at times and always seemed to be trying to process something rather than relaxing and enjoying. I think that increase in chatter and activity is good for her but she does need the down time too. After her long nap we enjoyed a nice dinner out on our balcony as the sun started to set then Janet agreed to have a hot tub so I could stretch her as we hadn’t done any of that today yet. Once again I got very good results in a short period of time with the left leg maybe being a little tighter than Friday. I straightened her right arm amazingly well and even opened her right hand easily in the thirty eight degree water. Janet’s attempts at doing some squats were nowhere near as strong as her right leg seemed to be doing it’s own thing again. Entering and exiting the tub went better than Friday as I refine my technique and I look forward to more frequent spa experiences with Janet.

To wind down the evening we watched The Voice and ended up staying up way too late for Janet, eleven o’clock by the time I turned her lights out. She lasted through all but the last ten minutes of the show and was asleep within seconds of the lights going out. I don’t like keeping her up that late but she was determined to watch the show and as long as she was engaged I let her stay.

So ends a very active weekend with good times spent with Laurel and Heather, a nice visit with Courtney, some fun in the sun, shopping, church, dinner out and dinner outside. Not to mention the hot tub. Praying for a restful night that restores Janet’s energy for a productive day tomorrow.

Say Yes to the Dress? Janet & the girls shop for a wedding dress for Heather. #TSJ

Janet awoke earlier than I thought she would this morning and we were eating breakfast by nine. As planned there was no rush to do anything this morning so once breakfast was well underway I brought out a whole bunch of bathroom type stuff for the girls to purge. It didn’t take long to discover that Janet is a curling iron hoarder. Six pairs of them! She is also a contact lens case collector, dozens of those were found in various spots. It all made for some good laughs and Laurel and Heather each managed to find something they could use that Janet no longer will and we have less to pack come moving day, whenever that is.

More purging took place downstairs as we sorted through an old cedar chest that contained a lot of old dresses the girls used to wear and a cute pink lacy sleeper that Janet says was Andrew’s. I hope not but you never know.

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That was a pretty active morning and I think Janet maybe got up a little too soon as she was pretty tired by 11:30. Laurel and Heather gave her a good stretch then she agreed to have a little nap before the big event of the day.

An hour later Janet was awake and re-energized for an afternoon of wedding dress shopping for Heather. I dropped Janet and the girls off downtown so they could go for lunch before the two o’clock appointment at the bridal salon. When I picked them up at City Park later on Janet was hanging in there nicely and said they’d had a good time. Heather was unable to say yes to a dress though.

We met Courtney at church tonight then all went for a pre Cinco de Mayo dinner at Hector’s Casa for what is a family tradition. As far as I know there is no Mexican blood in our family but its always fun to go out for Mexican food on Cinco de Mayo. Janet was doing really well so was allowed to have a margarita. There is a Keek of her first sip. @larrylatour . Dinner was good with the conversation centered around weddings of course as Courtney is getting married late this summer.

The day was quite busy for Janet and after lounging in her wheelchair for a little bit once we got home she fell asleep before I could get her PJs on. Praying for a night of rest and healing and looking forward to an enjoyable morning with Laurel and Heather before they both head back to their homes in the afternoon.

Hot Tubbing. Fun in the sun with the girls. #TSJJ

Unbeknownst to Janet, Heather and I drove out to Connect this morning so Heather could hang out with her mom before Laurel arrived. We got there as Janet was finishing breakfast and I sat with her for a minute then cued Heather for the surprise appearance. You can see the reunion on Keek. Janet seemed very bright and was talking well. She ended up going to the gym shortly after I left and had a solid workout with Lorne and Karl.

The girls all arrived home around one thirty with Janet all smiley and enjoying herself. She had quieted down quite a bit since the morning and seemed a little tired. It could be that she was a little overwhelmed having her two daughters all of a sudden here instead of just being talked about. She agreed to have a nap so she would be better able to enjoy the evening.

Happy hour took place out on the deck and I managed to carry Janet down there reasonably easily. Laurel and Heather had gotten all the patio furniture washed up during nap time so Janet was able to sit in a patio chair like she always did and have a nice visit in the sun. We convinced her to try the hot tub kind of by bribing her saying if she did and got a good stretch in there we wouldn’t have to stretch in the house later. Not sure if that’s why she agreed or not but into our bathing suits we got. Lifting her into the spa was easier than I thought it would be and Janet settled in quite nicely. The pool at KGH is thirty six degrees and our hot tub is thirty eight and those two degrees made a big difference. I was able to stretch both her legs out better than ever before and Laurel got some decent range on her right shoulder. There is barely enough room for Janet to float straight out on her back and as she did I was able to let go of her for about three seconds without her sinking. As expected, getting out was a bigger challenge but we managed and before doing so Janet stood with me in the middle of the tub and did some squats. The deepest ones I’ve seen her do. Warm water is magical.

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Everyone pitched in to help make pizzas for dinner then we had a nice family chat with the last of the 2012 CedarCreek Riesling that had gone nicely with the pizzas. Janet was very tired but determined to stay up so that she didn’t miss anything. She finally agreed to go to bed and was snoring within seconds of the lights going out. Praying for lots of rest tonight and a bright and energetic tomorrow.

Keeping Score. Late night for Janet. #TSJ

Janet was surprised to see me this morning as she had forgotten about swimming. Jess reported that they tried to go to the gym but it was busy so the only activity Janet got this morning was Speech with Mary Lou. Apparently that went well with Janet talking nice and loud and clear as she practiced asking questions instead of answering them like she mostly does.

Our drive to KGH was chattier than usual but in the pool Janet seemed a little tired and had zero command over her right leg. I wish I knew why this happens and how to prevent or correct it as it was tough for Janet to do her standing and walking exercises in our first session. The second half hour was better though and I was able to let go of her as she floated on her back for a couple of seconds. Same thing with standing on her own. It took a long time to get there but she was able to stand for a good five seconds a couple of times. Walking continued to be a challenge as her right leg was largely unresponsive.

While walking back to the car we were stopped by Monica, the transition nurse from 4B. She was very excited to see Janet and amazed by her progress as she had not seen Janet for probably seven months now. Janet had no clue who she was but enjoyed the compliments. Monica mentioned to me how she and her husband had gotten their Power of Attorney done and updated their wills after watching what Janet and I have gone through without a POA in place. She even told the story to a colleague the other day and they are going to get theirs done now too. If any of you married folks reading this don’t have an Enduring Power of Attorney in place and up to date wills, get on it. You never know what’s going to happen and things can get really messy without that paperwork.

We deviated from our intended lunch destination choosing to support a local business that I spotted along the way, Deli City Cafe. Good thing too as while we were ordering we saw our friend Roger who was just finishing his lunch there. It was nice to see his big smile and to know things are going well for Carrie and he. I wanted to get Janet back to Connect in case we could see the wheelchair guy so we ate our lunch once we got back there but no wheelchair guy. That did allow for a late nap for a tired Janet and I got her laying down a little before four. What was planned as a quick siesta turned into a two hour nap as we both fell asleep until six o’clock. Not sure what that was all about for me but I must’ve needed it.

Bob took Janet to the gym after dinner and she actually went without arguing. Bob mentioned Janet’s lack of command of the right leg but said all else was good. Janet seemed pleased and was ready to watch some playoff basketball. It was a good thing she had that nap as the game was really good and she was actually able to stay up to watch it all as it ended around 10:15. For the first time Janet was able to repeatedly tell me the score of the game and she is starting to understand some of the rules again too. I had her lounging in her wheelchair the whole game and was able to get both legs quite straight and she was comfortable the whole time. I noticed when I put her to bed that her right leg was toasty warm just like her left one, often it is quite cold, even icy sometimes. She was able to move it on command quite well to put her PJ’s on too. Maybe the lounging helped?

As I said goodnight I reminded Janet that Laurel will pick her up around lunch time tomorrow and bring her home to see Heather and me. She said, “I hope I remember”. I’m sure she will. Praying for rest and healing and lots of energy for tomorrow and the weekend.

On the Town. Bright day for Janet. #TSJ

After an afternoon of house hunting I arrived at Connect to find Janet in the gym with Garrett and Joel, an OT student. These are always good experiences for Janet as she gets a full workout so the student can learn all her exercises. Joel did a good job with her and Garrett noticed improvement in Janet’s legs and hips. Brian was there too, he says observing Joel but spent the whole time talking to me so I don’t know about that. It is really good to have Brian leading the team as he is always looking for ways to make things better for Janet and is very easy to talk to. We came up with a few more tweaks to the wheelchair and look forward to trying them. Both Brian and I want to make sure everything is right for Janet before we make the move to purchasing one.

When Janet’s workout was over we headed to her room for a Skype session with Leslie and Gavin. Nice to see them sitting on their deck as opposed to shoveling snow. Janet did a good job of conversing with her sister and made some rather intelligent statements and responses to Leslie’s questions and stories.

I decided since we were going to the Lake Country Coffee House for music night tonight we may as well go a little early and have dinner there too. We met Suzanne there and had a very enjoyable evening catching up with her, listening to some music and having a little food. There is a Keek introduced by Janet if your interested. @larrylatour

Janet and I got back to Connect around eight and she was showing signs of fading and even admitted to being tired. We slowly started the bedtime routine as there was lots to talk about that I hadn’t had a chance to talk about yet. During our conversation we ended up on Facebook and I asked Janet if she knew who this was.

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As soon as she saw the picture she burst out into one of the loudest and longest laughs I’ve heard from her. For a little while I thought she was going to cry but she kept laughing and saying something like “uggily”. As soon as I gave her the first syllable she knew it was Gilligan and laughed some more. A fun way to end a good day for Janet. Garrett said her day was good. Her and Jess made chocolate chip cookies, she had a good session in the gym this morning and even agreed to have a nap. She must’ve been dreaming during that nap as when Garrett got her up around three she was very happy and saying it was her birthday. When she finally realized it wasn’t her birthday she started crying. As long as I’ve known Janet she’s never made a big deal out of her birthday, in fact she mostly wanted nothing to do with it at all. Looks like this year will be different.

Praying for lots of rest tonight that provides lots of strength and energy for tomorrow.

Transfer of Power. Janet powers through without a nap. Again. #TSJ

An all too familiar sight greeted me at Connect this afternoon. Janet lounging in the living room with a big grin on her face. This time she very intelligently explained that she didn’t think she needed a nap so she chose to watch TV instead. This was not the usual defiant Janet or the whining tired and stubborn Janet. This was a very calm, articulate and reasonable Janet that I couldn’t get upset with. She understood that she would likely be ready for bed earlier than usual and that proved to be true.

Janet wanted out of lounging mode so after chatting with Jess to see how the day went we headed for Janet’s room but Brian was in the kitchen so we got to talk to him for a while and that took up any possibility of a power nap before our Skype chat with Mary/Gaga. Jess said Janet’s day had been busy starting with a shower then an early visit to the gym at which she was able to get really good stretches on Janet’s legs. Janet reported that singing with John was fun but she didn’t have the same sparkle in her eye about it as I’ve noticed before. Maybe just because she was tired.

While Brian was around I asked if he would watch me do a few car transfers with Janet to see if there’s any better methods than the one I’m using. He smartly invited Tez to observe as well and we spent a good half hour discussing how best to get Janet into the Santa Fe. Getting out is no problem thanks to Janet’s increased strength and her ability to “stand”. The consensus for getting in seemed to be, continue with the lifting for now but we’ll try and have Janet practicing moves that can enable her to do more herself. Long term it may mean a different car for us, one that is a little lower to the ground. Brian mentioned there is a Lexus that kneels like a bus so I checked that out but was extremely unimpressed with their website and couldn’t even find a mention of that feature. Very cool idea though.

Because of the transfer experiments we were a little late for our chat with Mary/Gaga but I think the movement and sunshine gave Janet a bit of a second wind and she was able to have a very nice chat with her mom. That took us to dinner time and Garrett had Janet BBQ a some chicken breasts for everyone. She’s really getting the hang of the BBQ thing and enjoying the challenge of cooking.

I gave her the option of going to the gym with Bob or Garrett and that seemed to prevent her from arguing about going so she wheeled off with Garrett. Janet was pretty tired by this time and was almost ready for bed when she returned at 7:30. That was too early though so we did a little research on something that was mentioned in the book Slow Dance. It’s called The Feldenkrais Method and is based on the theory that your brain can always learn new things and you can teach your body to move as it naturally wants to because over the years it’s learned to move incorrectly. The whole thing seems a little weird, like yoga for people still doing acid, but I think there’s some truth in it as well. If any of you know anything about it or have experience I’d love to hear from you.

Today was a solid day for Janet with good visits to the gym, good standing transfers(even surprising Tez when he “danced” with her), great BBQ’ing and really good communicating. I’ve stopped nagging her about drinking water and today she did quite well on her own. Looking forward to a fun day tomorrow. Praying for a restful and healing night.

Keeping Up With the Jones’s. Good day in the pool. #TSJ

Janet slept so well last night I had to wake her up this morning so we could enjoy breakfast and not be rushed to get to the pool. She seemed bright and energetic and was ready for action once in the water. My goal for her today was to get more confident in the water and to gain more spacial awareness. After warming and loosening up I tried to get her floating on her own and she almost made it and I think that if she can gain control of her right leg she’d be there. That right leg was her biggest impediment today by far as it was doing it’s own thing most of the time. Quite the mystery to me as every day is different and every hour can be different. Last night she couldn’t move her right leg to save her life, while getting dressed this morning she moved it almost as well as her left leg. Janet is as aware of not being able to get that leg to do what she wants it to do as she is her right arm and for the most part handles that awareness very well. Hopefully she keeps trying to get them both to work. The session continued with some walking and standing exercises with Janet trying very hard to accomplish both. During our second half hour I focused on the walking and standing and Janet stood on her own for about three seconds a couple of times. Again, that right leg prevented her from doing better but she quickly learned how to save herself from falling to the right and even got herself to fall towards me a few times and she doesn’t seem as afraid of getting her face in the water as previous. I’m hopeful I can get her standing on her own soon.

We made our usual exit through the Rehab Unit and had a nice chat with Nicole, a Speech Therapist that worked with Janet while she was in rehab. Nicole was so surprised to hear Janet speaking so clearly. That visit was a nice confidence booster for Janet even though she didn’t really remember Nicole. I noticed Dr. Jones at the nurses station and went in to tell him someone wanted to see him. He immediately put a huge smile on his face and headed out to see Janet who flashed him the biggest smile of recognition I’ve seen her give anybody. She remembered Dr. Jones and he was totally thrilled to see her. Had I known the reunion was going to be that dramatic I would have had the camera rolling. Dr. Jones is very impressed by the progress Janet has made and said she’s come farther faster than he thought she would. Amen.

Seems everywhere we go these days someone knows Janet and as expected at the passport office we saw Todd, a super guy that has done a lot of landscaping work for us. Janet wasn’t sure who I was talking about going in but recognized him as soon as she saw him. Janet still says no when I ask her if she wants to say hi to someone but when she actual does it she is very happy so I’m not going to ask anymore.

There was time for a short nap before dinner at Connect then time for a quick stretch before a Skype chat with Andrew. The stretching seemed to give Janet a little energy boost and enable her to have a decent conversation with Andrew. She was pretty much ready for bed then but asked if I would read a little Slow Dance to her first. Once again lots of similarities to Janet’s experience and she is more accepting of them now too. Her bedtime routine went really well, no significant confusion, and she was happy to wrap up in the blankets and call it a day. Praying for lots of rest and healing tonight so that Janet is prepared for an active day tomorrow.